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Eating disorder treatments lack in Louisville

Across the nation, 20 million women and 10 million men suffer from an eating disorder at some point in their life, according to the National Eating Disorder Association. In Kentucky, more than 102,000 women and nearly 46,000 men suffered from eating disorders, according to the association's 2011 numbers, which were the most recent available. Nationally, the rate of new cases has been increasing steadily since 1950, according to the association.

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Eating disorder treatments lack in Louisville

Taylor Harrison, The Courier-Journal
11:01 a.m. EDT August 22, 2014

Abby Pawley, 29, who lives in the Highlands neighborhood, has been in recovery from an eating disorder for the past 2 1/2 years, having to travel far distances for therapy. Pawley, seen here in a Highlands-Douglass beanery, said her anorexia began at age 10 developing into bulimia 14 years ago. 08 Aug 2014
(Photo: David R. Lutman/Special to The CJ)

When Abby Pawley was a teenager, she would binge eat and force herself to throw up as many as 40 times a day because she didn't like the image staring back at her in the mirror.

"I knew if I didn't do something I was going to die; it's like I wanted to stop, but I just couldn't and I didn't know what was wrong with me," Pawley said.

Pawley soon learned that she was suffering from bulimia, an eating disorder that left her with an intense fear of gaining weight.

Pawley's Louisville therapist, Virginia Cox Evans, encouraged her to enter an inpatient program so she could get more intensive treatment. But Pawley's search for help turned up what some doctors and therapists say is a major concern: There are few inpatient programs in Kentucky for people with severe eating disorders, and long waiting lists for people who need intensive outpatient therapy.

In a city of Louisville's size, "it's actually very shocking to know that there's very limited resources," said Anna Grout, a nutrition specialist who works with eating-disorder patients. "If somebody needs a higher level of care, it's not here in the city, so they have to go somewhere else."

Pawley, now 29, went to Florida, then Arizona and finally Tennessee for inpatient treatment at centers that focus specifically on eating disorders. No such specialized centers exist in Kentucky.

Local doctors say the lack of treatment options is a problem because they are seeing more people suffering from eating disorders — the majority of them girls and women. Grout, for example, sees 20 patients a week and has a waiting list.

Dr. Dana Distler at Middletown Pediatrics said she sees the most intense diagnoses in girls ages 11 to 17, but she has seen body image issues in girls as young as 7 or 8 years old.

Across the nation, 20 million women and 10 million men suffer from an eating disorder at some point in their life, according to the National Eating Disorder Association. In Kentucky, more than 102,000 women and nearly 46,000 men suffered from eating disorders, according to the association's 2011 numbers, which were the most recent available. Nationally, the rate of new cases has been increasing steadily since 1950, according to the association.

Evans said the need for inpatient treatment programs in Louisville is dire, and some patients need around-the-clock care.

"It's not a 9-to-5 disease. It's 24/7," she said.

Dealing with the disorder

Pawley's eating disorder began with anorexia when she was 10 years old. She said she ate a little bit less each day until she was down to only 500 calories a day. She started eating more after her doctor warned her that her eating habits were dangerous. But at 15, she began binge eating and throwing up continually through the day. She also developed an addiction to alcohol and drugs that lasted well into her 20s.

Her first stint in treatment at The Renfrew Center in Florida didn't work because she didn't take therapy seriously and continued to purge.

Two years later, at age 17, she was ready to get help and traveled to Remuda Ranch in Arizona. Her drug and alcohol addiction had spiraled out of control — she would often drink until she blacked out. "It got to a point where I would wake up and there would be empty bags of food and I wouldn't remember binging.

"I remember my dad making comments to me like, 'You know, you look like you belong in a concentration camp.'"

When she got back from Arizona, she didn't return to her school, Sacred Heart Academy, and was tutored instead. After a month or two at home, she stopped going to therapy, thinking she was cured.

"And then it started all over again," she said.

Waiting lists

In Louisville, there are psychiatrists and outpatient programs that focus on helping people who suffer from eating disorders but there aren't enough, and many of the programs have waiting lists, Grout said.

Once someone is ready to seek treatment with a psychiatrist, they are sometimes put on a six- to eight-week waiting list, Distler said. After having to wait that long, she said many patients change their mind and fall through the cracks.

It can be hard for adolescents — the primary age Distler treats for eating disorders — to open up about their struggles, which is why many people enter treatment when they are already well into the disorder, Distler said.

"It's my opinion that the farther into that disease process that you are, the harder it is to kind of re-wire the brain into a more cognitively positive way to look at health and body image and fight back against those compulsions," she said.

Evans, who runs the Pathways program for eating disorders in Louisville and has worked with patients suffering from eating disorders for 25 years, said the biggest risk when treatment is delayed is that patients could start physically deteriorating rapidly. A delayed start could mean people end up staying longer in inpatient treatment, which usually lasts at least 30 to 45 days.

Pathways, a community-based center for mental health care, offers individual, family and group therapy for people with eating disorders, but none of the programs are inpatient. Pathways works with local psychiatrists, physicians, pediatricians and dietitians for a comprehensive treatment program for both male and female patients, ranging from adolescent to adult.

Dr. Stephanie Hall, a psychiatrist at Louisville Psychology, helps treat patients in collaboration with Pathways and often prescribes medication. Generally, an anti-depressant is the first line of treatment, since many people who have an eating disorder suffer from underlying anxiety or depression, Hall said.

If the depression isn't treated, Hall said, "It definitely impacts their recovery in a negative way."

Hall also said people are less willing to enter inpatient care if they have to move far away from their families — like Pawley did.

"People would not be so reluctant to get inpatient treatment ... if they could get it locally," she said.

The Brook Hospital's KMI location on Old LaGrange Road offers inpatient care, but that help is only available for adolescent females.

Meg Fraser, director of intake at The Brook Hospital - KMI, said Louisville could benefit from having a treatment center specifically designed for those suffering from eating disorders.

For many like Pawley, eating disorders become a control issue, Evans said. Even eating supper can be a big deal. They will think, "can't eat, what if I get fat, what if mom put butter on green beans?" Evans said.

Evans sees about 30 patients a week and about 60 percent of her patients suffer from eating disorders. Half of her eating-disorder patients are adults and half are adolescents; she's been treating some of the adult patients since they were in high school.

Evans said the disorder is harder to detect in males — which make up 10 percent of her patients — especially those who are going through growth spurts in adolescence.

Distler said there are certain clues she looks for to help identify if a patient might have an eating disorder — or shows tendencies of heading in that direction — including patients getting thinner, complaining of dizziness, chronic headaches, changes in their menstruation or chronic abdominal pain.

She said it's also worth noting if they suddenly have a problem eating certain foods, even though they have never shown an aversion to that food previously.

Distler said she diagnoses most patients with eating disorders during the summer months when they come in for physicals before school. Over the last few years, she has seen about three diagnoses a summer. But in the last few weeks, she has diagnosed five or six patients.

Often, eating disorders go unnoticed because families aren't taking their children for annual physicals with their primary doctors enough, Distler said. Parents are turning to clinics to do quick physicals to get kids approved for sports, rather than sticking with a primary care physician who can see changes over time.

The point of insanity

Pawley's third time in an inpatient facility was in Chattanooga, Tenn., at Focus Treatment Centers. At 26, she sought help after hitting a telephone pole while driving drunk, leaving her with a shattered heel and a fractured vertebrae.

When she spoke with the police, they asked her if she had thrown up because there was vomit in her car. Then she remembered that she had a cup full of vomit in her cup holder from when she had purged. "That was so normal for me, to drive around with vomit in my car. That was the point of insanity I had reached."

Pawley said hitting that pole made her realize she needed help. Now, almost 20 years after she first developed an eating disorder, she still attends group and individual therapy, but has been in recovery for two and half years.

Pawley's dream is to one day open a halfway house in Louisville so that girls who are suffering from eating disorders can get help and know they are not alone.

"Life isn't perfect, but I'm living life today."

Reporter Taylor Harrison can be followed on Twitter at @Taylorharrison5.